Lower Leg Lymphedema

Hello Happy - I usually post on the main forum but since I suffer with lower leg lymphedema (both legs) I noted that you started at just about the same weight as me (435#) I am at 245# now (2 years post rny) and am extremely frustrated to think I am not losing any more.  Can you tell me any secrets per chance? (besides buttoning up my lips lol!) My lower legs still swell but I do have stockings to wear which I do when they are at their worst but this summer I hardly wore then at all because it was just tooo hot!!
Congrats on your super weight loss - You give me hope that perhaps I can attain my own goal of 150# (I'll be thrilled if I can make it below 200#).  I know my family watches my frsutrations grow and of course there is my new addiction to anything sweet which I am dealing with as best I can.  It's tough but I try and remember how much tougher life was for me at over 400# and usually that brings my appetite into check!  Just wanted to say hello and say you are an inspiration  to others (most especially me!!!) Take care , blessings,  Mary

I too have lower leg lymphedema- from a combo of having no lymph nodes in my groin and then breaking my leg.  I went through the main manual drainage and wrapping for almost 3 years.
Since surgery I have noticed some improvement, but I still gain 5 - 10 pounds of fluid each day (it is usually back off in the morning).  My doc told me to be sure to drink even more than the recommended 64 ounces per day and to keep exercising.  The swelling is annoying, but not nearly as painful as it was 100 pounds ago!!

Reenie

Hello Beanzo,

I hope this message reaches you in good spirits :). I too have lower leg Lymphedema like you (but bilateral/both legs), and I read that your Lymphedema is caused by a combination of having no lymph nodes in your groin and breaking your leg. Can you please tell me which (name) specific test(s) or diagnostic tool(s) were used to identify the missing lymph nodes in your groin, and the cause of your Lymphedema? 

Thank you so much, 

Ayana

 

I started manual lymph drainage and wrapping about a year before my surgery and continued it for a year after then moved to wearing compression garments. After surgery it's much easier to manage the lymphedema in my legs, but if I go without my garments they begin to swell...I will always have to manage the LE. Yours might be more difficult since the lymphe system was damaged with surgery...I've been told mine is impaired but does function at some level...when lymph nodes are removed or lymphe systems is impeded by cutting it can make things more problematic. Best wishes...I hope WLS does improve your situation....

hello sarah,

I too started manual lymph drainage.

I don't know about what others have to offer...as far as Doctors in different cities....but look online for Lymphedema centers. I am going to be in compression stockings the rest of my life...but I am thankful for it.

kinder touch lymphedema center - saratoga springs NY

I have had primary lymphedema for six years this time around.  I was fortunate in that the first time that it reared it's ugly head, it went into remission about a year later.  I was reading the thread here and it seems that massage therapy (which they like to call manuel lymph drainage) is the only form of relief that people in upstate NY are getting. 

There is a doctor in Austrailia that has had remarkable results using an electrical stimulation device to reduce swelling in lymphedema affected areas.  Unfortunately, the machine is only available  to clinics and hospitals, as it does not have FDA approval on a home model yet.  The cost is $6000. 

Has anyone heard of a therapist in our area using electrical stimulation?  Perhaps if we start asking these people for it, they will see it as an investment and someone will actually buy one.  The squeaky wheel gets the grease, after all.

The problem with manual lymph drainage and the bandaging practice is that my legs are so large due to the fluids, that I can't get my pants or shoes on to go to work once they have the bandages on.  It just isn't practical for me.  I have to work to pay bills.  Disability puts you at poverty standard, so that is not an option.

To me, the definition of manual drainage would be to have a drain in put in your legs and the excess fluid removed that way.  Hell, the fluid comes right thru my skin pores, as it is right now.  It couldn't be that hard for them to put some sort of a drain in you, in a sterile environment, to relieve the pressure.

I hated the bandaging portion of the physical therapy I had... I actually had to wear a skirt (something I've not worn in years due to not wanting to display my swollen legs).  I talked to the LE PT a lot about options for compression post therapy because I needed to be able to travel and look professional for my job.

I ended up using Circaids ****il I got down to the point of being able to use regular off-the-shelf compression socks with the weight loss).  So long as I put on my socks and shoes immediately after getting up, I could manage to get pants to fit over the Circaids.  Wasn't overly comfortable, but it was manageable.

Once I reach a stable weight at or near goal, I'll be going back to the PT and seeing if she thinks I still need proper custom-made compression garments.  If so, I'll get them.  The problem with me and off-the-shelf socks is that they cut in at my ankle - and the swelling is still there a bit even with the compression.

Does your insurance cover the custom garments? From what the PT showed me, they're thicker than athletic socks, but not so thick that you should have a problem fitting them under shoes/pants.

    Lower Leg Lymphedema

I went to the OH Convention this past October in Rye NY, there was a vendor there "Lipo Express" selling compression garments.  They are usually used for post plastic surgery patients, however, I thought I'd try it for the lyphedema.  I ordered a full length one down to the ankles.  That first weekend, I dropped 14 pounds, through December of 2009 it became 40#.  Then I had my kitchen remodeled and was without my Oven, sink and Microwave for 2 weeks and was living on cheesesticks, cottage cheese and hard boiled eggs.  At work I ordered out a salad everyday. That caused me to lose another 20#.  I went to a consultation for fat transfer and was told I have no excess fat on my body to harvest for transfer, the only thing left on me is lymph tissue and excess skin.  So I have reached 149#, still not at goal but maintaining nicely.  The compression garment was the cure for me, yes the legs are still swelling but its more controllable.